The Alpha-1 Foundation is a not-for-profit, Florida-based corporation founded in 1955 by John Walsh, Susan Stanley, and Sandy Lindsey. These three individuals were diagnosed with Alpha-1 Antitrypsin (AAT) Deficiency and formed the Foundation to promote research and find a cure for this genetic condition. The majority of members on the Board of Directors are diagnosed with Alpha-1 or have a family member diagnosed with Alpha-1.
As the first foundation to focus on researching Alpha-1, the organization has made great contributions to the world’s understanding of the condition. The foundation’s robust resources provide those affected by Alpha-1 with information, support, and education on everything from testing to treatment options. .
The Alpha-1 Foundation also sponsors several support organizations, including in-person, virtual, and kid-centric support groups for families affected by Alpha-1. In addition, individuals and their caregivers can participate in a Peer Guide Program, where newly-diagnosed individuals will be paired with another person with a similar experience. Likewise, caregivers for those with Alpha-1 can be paired with another Alpha-1 for guidance and support. These groups, combined with the foundation’s educational resources, help those with Alpha-1 live the highest quality life possible until a cure is discovered.
Alpha 1 Foundation Additional Information:
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- Location: Headquarter in Florida.
- Primary Emphasis: The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection, and a cure for Alpha-1 Antitrypsin Deficiency.
- Link to website: Alpha 1 Foundation